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Wednesday, June 1, 2011

There are two things that can make living with a bleeding disorder extremely difficult: 1) living life undiagnosed and having to undergo numerous hospital visits or heavy periods without knowing why, and 2) being scared and unprepared.

As a young lady who has lived with Von Willebrand's Disease for all seventeen years of her life, I understand the importance of being brave and being ready. Too many times girls let their bleeding disorders (even if they're mild) run their lives. That's not how it's supposed to go! You control your bleeding disorder instead of it controlling you. Fear of being weird or looked upon as an outcast because of your chronic illness will result in nothing but self pity and emptiness. We live different and sometimes more frustrating lives than the average teen girl, but it makes us stronger and braver!

What are some bleeding disorder issues that cause you to panic when you think about them? How do you handle situations when you need to self-administer medical attention? Are you constantly worrying that someone will find out about your bleeding disorder? If so, then it's time you realized the unique-ness of your disorder and how you can keep it under control.

"I've got this."

That's my motto when dealing with my disorder. :) If something goes wrong (and you don't need to be hospitalized or seen by a doctor/hematologist) then just take a deep breath, calm down and say, "Yeah, I've got this.".

My bleeding disorder isn't severe, I've only been hospitalized once and (so far) have dealt with all injuries on my own with a little help from my mom and dad. I have a moderate-mild type of VWD, but there are still a few things that I need to take a hold of and deal with. Things that all girls with bleeding disorders must learn to cope with.

But what if you're scared to deal with it? Or worried that you can't? What if something goes horribly wrong and you bleed all over yourself in front of everyone?!

Relax. :) You've got this, remember?

I'm going to give a few examples of how I've taken control of my bleeding disorder and moved from letting my parent's handle it to taking care of it myself.

Periods. The most dreaded and probably worst part of having a bleeding disorder if you're a girl! What do you do?

How I Handle It:
*I take medication consistently at the same time every day to prevent periods
*I make sure that if I do have a breakthrough bleed I have medicine to take that lessens the bleeding (Amicar or Lysteda)
*I always, always, ALWAYS keep at least 5-6 pads in my purse, backpack and suitcase just in case I start bleeding
*I journal my periods so if my Hematologist has any questions I can show them the charts
*I keep a jacket with me in my backpack in case I stain my jeans and need to cover it up until I get home (other girls keep an extra pair of underwear or shorts with them in cases of very heavy bleeding)
*I make sure to eat healthy (lots of iron!), get lots of sleep and avoid sleepovers and pool parties. ;)

But there are issues besides periods, right? Like regular bleeds and injuries! What about those?

How I Handle It:
*Key in this, in my opinion, is being comfortable talking about your bleeding disorder with the people you're with (especially as we girls get older and start spending more and more time out and away from home!)
*I keep a First Aid kit in my backpack that has band-aids, QR powder, a gauze pad or two and a couple pads
*I have at least two good ice packs that are constantly in my freezer and ready to go when I need them
*If I'm out and something happens, I don't stay quiet and pretend like everything's OK, I'll ask for band-aids or an ice pack and just say that it's no big deal so long as I take a few minutes off to deal with the injury
*If I'm going out of town I make sure to bring a travel first-aid kit (I also keep a Medical Emergency ID Card in my wallet and backpack)
*I make sure my friends know about my bleeding disorder and why I can't participate in certain sports
*(Again, this deals with being out and away from home) I always wear my Medical ID Bracelet and never leave home without it!

In order to take care of yourself, you need to know how to take care of your bleeding disorder. Educate yourself! Read (reliable material that has been approved by doctors, not Yahoo! Answers) and study and ask questions when you go for check-ups at your HTC! And don't stay quiet. Don't ever keep quiet because you're embarrassed.

Also, talk to other girls with bleeding disorders and see how they prep for school and work while living with a bleeding disorder! What tricks have worked for them? How can you swap information? Learn, live and grow. :) And be proud of who you are!

Who you are because of your bleeding disorder is very special. You're unique and strong. Live like it! Remember to take care of yourself, remember to take control of your bleeding disorder and most importantly remember to be brave!

Every teen has them, especially girls, and sometimes we let those storm cloud thoughts steal our sunshine. And sometimes, living with a bleeding disorder can make it even harder to keep a positive outlook about the face in the mirror staring back at you. Sometimes bruises on your legs ruin that summer tan you've been working months at. Or a nosebleed crashes your party in the middle of an outing with your girlfriends. Or you have to miss a swim party or a sleepover because you're on your period and you're afraid you'll bleed all over yourself.

Every single one of those instances has ruined my day at one point or another. Some more than once. And it always manages to get me down...way down. I'll sit down and cry for a while, wishing I could be normal and go play paint ball or swim with all my friends...but it never changes anything. And it always makes me feel worse.

A lot of Doctors and Nurses will tell you that you need to keep a positive outlook on life. And they're right. :) Why? Because sometimes, honey, positivity is all that's gonna keep you from smacking into rock bottom. You can't be "normal" like everyone else.

But hey, normal is overrated anyway. :)

Whenever you're having those tough days, try something like this:

*Give yourself a pep talk in the mirror before you leave for school or work
*Blast your favorite playlist of "feel good" music and dance around for a while
*Put on your best outfit, just to make yourself feel a little better
*Treat yourself to a hot bath or shower, maybe with a little ice cream to snack on
*Call up a friend and talk, maybe even cry a little, just to get it off your chest (even better would be to have a friend who also has a bleeding disorder. :) Just to have a little common ground!)
*Read your favorite book or watch your favorite movie

I like to give myself mirror-pep-talks and sing out loud to all my favorite feel good tunes. Try finding a routine that works for you!

And always remember that you--your bleeding disorder included--are beautiful. And special. :) So give yourself a pat on the back for being tough enough to make it this far!

Welcome!

Hi there! Welcome to "GwBD"! :) This blog is here as an online support group and a way to connect/share with other girls who have bleeding disorders! Stay a while and browse through the different pages and posts. :) I hope you leave feeling confident that you're not alone in this battle.

Have fun & much love! <3

World Hemophilia Day 2013

Join with the bleeding disorders community worldwide and wear RED to show your support on April 17th, 2013! :)

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"I can be changed by what happens to me. But I refuse to be reduced by it." -Maya Angelou